Jinx!

I’m back! I had my treatment in late July and have been hesitant to post anything for fear of jinxing the (so far) amazing results. I did post something on Facebook a few weeks back and sure enough, later that night I couldn’t walk. But let’s start at the beginning.

In June, I went with my siblings and sister-in-law up to Mt Shasta to scatter Mom and Dads ashes. It was poignant, and heart breaking and liberating all at the same time. As I’ve written here before, my expectation of the whole “circle of life” thing was completely shattered when I fell to my knees and wailed from a very deep place I didn’t even know existed within that I missed my Mom! Fortunately, my brother and sister were there and my sister kept me from completely melting apart.

While out of town I got a call from my neurologist informing me that my treatment was being moved out two weeks. Damn! I had myself totally psyched up for it, but as it turned out it was for the best. When I came home from my trip, my beloved, pain in the ass, long time companion Clark wasn’t feeling so great. Fast forward a week and I was saying goodbye to my old pal. I miss him tremendously, but he did me a solid by checking out when he did. That cat was in. And out. And in. And out. And in…you get the idea. During my infusion week it would have been a bit much I think.

So I’d lost my mother. I’d lost my cat. It was time to lose my immune system. I’m sure I’ve made it quite clear that my family ROCKS. No surprise then, that my sister came straight down to go through the procedure with me (and my nephew popped in from NY for a night to offer some support). She and I secured candy (to counteract the steroid taste), cell phone chargers, snacks (duh, it’s my family), blankets, and water bottles and headed downtown to the hospital.

Everything I’d read said to plan 6-8 hours per day for the five days of the infusion. Yikes ~ that’s a long day. Ha! The protocol at the hospital infusion center required 10 hours ~ each day. The nurses were fantastic and had been infusing Lemtrada for over a year, so they had it down. I partly attribute my comfortable response to this drug to their expertise in administering it and the tweaks they’ve figured out to make it as uneventful and successful as possible.

My sister stayed for a week, followed by my brother for a week, followed by my daughter for a week (not to mention cards, visits, shopping, food, flowers, phone calls and texts from many incredible friends).  My gang did laundry, chores, cleaned house, shopped, cooked…I basically had staff. It was fantastic.  I am so fortunate that I felt great, almost right out of the gate. My head felt clear for the first time in years (possibly due to not drinking wine for a change as one friend pointed out, but anyway…).

So on the Facebook posting night, my daughter Liza was here from Colorado, and her boyfriend was here too. We went over to Anna & Chris’s house for dinner and holy shit….my legs just stopped working.Completely. I wasn’t unduly alarmed; one is warned of all kinds of crazy stuff that can happen post infusion, but it wasn’t fun. Fortunately, with two paramedics on hand, I knew I was going to be safe. Liza had the wherewithal to put in a call to the on-call doctor who told her I needed electrolytes (it’s critical to stay hydrated, but all that water had had flushed everything out of my system apparently). I had a Gatorade, and within 20 minutes was back on my feet. Yay!

Since then, I’ve been feeling marvelous, albeit pretty low energy. The goal with Lemtrada is to stop progression, and any improvement beyond that is gravy. I visited my doctor last week and was told I’m right on track, which is super encouraging. I now continue to get labs done monthly for the next four years (monitoring against all kinds of dire and weird stuff) and then I’ll get an MRI in one year to see if progression as been halted, then do this all over again for a for three day second course of treatment.

I’m not allowed to expect anything beyond containment of this disease, although many people have regained various degrees of ability. Obviously I’m tempting fate by writing this blog post and possibly jinxing myself again, so I’m going to say this very quietly: last week I walked across a room, unaided, carrying a glass of water! ;-).

Ssshhhh…..

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Is It A Little Warm In Here?

When I was in the audio business I went to a LOT of trade shows. At one company I worked at we had a slew of rep firms that sold our products across the nation into music and pro audio stores. These warriors obviously attended all the same trade shows as me, which were scattered throughout the year all over the country.

Although it might be hard to fathom, I was a pretty irreverent little punk back then (as were all my co-workers ~ but damn we certainly were witty and clever). We had this one guy who had a firm based in Minnesota. No matter where we were, or what time of year, or what time of day, he would always come running into our booth sweating profusely and saying, “Is it a little warm in here?”. Mercy, we made a lot of fun at the expense of that poor guy. Apparently I took the communal comeuppance and was chosen to pay the group sins by getting MS, whose worst enemy is heat.

Back in the day (so I’ve heard), if you you were suspected of having MS, you’d be thrown into a tub of hot water. If all symptoms got worse, then there you’d go. MS. I’m not sure if that’s true or not, but suffice it to say I haven’t had a hot bath in years.

Now add an equation of MS, medications, menopause and living in Southern California and you’ve got one noodly challenge to standing or walking. On top of this, I can’t stand air conditioning. All that fake cold air blowing over my neck, head and body – yuck. Consequently, I tend to be one big Gumbyesque mess come summer. And of course this being Southern California, it always feels like summer.

This new treatment that I’m about to embark on (the goal of which is to stop progression), has offered some other Lemmies (evidently the Lemtrada “in crowd” gang moniker) relief from the heat as time has gone on. This would be a big bonus for me! Geez, I’ve become a gray haired, over weight, over heated grumpy old lady with a walker now. I’m so totally ready to be cool again! : -)

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Hakuna Lemtrada!

Multiple Sclerosis is for the birds. No big news, that. What is big news are the many treatments that good ol’ Western medicine has been cooking up in the past decades since I was first diagnosed.

I’ve tried several of them ~ Copaxone, Tecfidera, Gilenya ~ and with the exception of Copaxone, I haven’t been too impressed. So it is with skeptical delight that I’ve decided to give another one a try. It’s called Lemtrada. This one basically annihilates the immune system then let’s your body regenerate it without the “memory” of MS. Sweet!

Downsides? Minor. Risk of cancer, thyroid problems, thrush, vomiting, rashes, death. You know, just about anything awful. But what the hell, death is the outcome regardless for us all, and despite that it seems extreme and in another decade it will probably seem as obsolete as using leeches to clean wounds, I’m giving it a go.

I know, I’m being glib (also no big news). Quite honestly I’m terrified. How can I not be? I’ve always thought going under the knife for any kind of elective procedure was risky, vain, unnecessary and actually stupid. Instead, I’m opting to voluntarily obliterate my immune system. Genious!

As expected, my incredibly wonderful and supportive family are lining up to take turns caring for me. My sister is coming from Seattle for the week of infusions (6-8 hours per day for 5 days), my brother is coming down from Northern California to take his stint and cook for me and keep me amused, then Liza comes from Colorado for a week to keep me company and shore me up. And of course, Anna is here the whole time being my rock.

As fucking freaked out as I truly am, when Liza was leaving from her visit last week I told her next time I see her, I won’t have MS! I don’t think that’s exactly true, but it certainly is a fantastic motivator!

I’m nervous and excited and expecting quite the journey. If this can stop MS in it’s tracks (and quite possibly allow my body to regain some ability back), I’m a thrilled and happy camper. Count on my brother to coin the phrase “Hakuna Lemtrada” which I”m hoping proves true…”it means no worries for the rest of your days…”!

 

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And Floss, Too!

I’m not proud of what I’m about to share, but here goes. I like to relax before dinner with a glass of wine and a puzzle of some sort (jigsaw, crossword, scrabble) as a segue from the day into the evening. Oddly (and thankfully) enough, a glass of wine tends to make me more steady on my feet ~ maybe it’s the sugar, or maybe it just relaxes me? I don’t really know or care ~ I just like being able to drink one with a clear conscious.

On this particular evening, for whatever reason, I was honestly just a tad tipsy (at least I hope I was based on what happened). I glanced up and saw out the window two people walking up to my front door. I recognized three things: 1) they were strangers, 2) they were teenagers, and 3) they were black.

I don’t like answering my door period, and I was startled for all three reasons stated above. Everything in the media says don’t open your door to people you don’t know, ever. The town I live in is very ethnically diverse with Armenians and Koreans, but not too many African Americans. Teenagers are, well, teenagers. Once I realized my 3 prejudices I was embarrassed at best, horrified at worst. Everyone is a stranger until you say hello, teenagers are inherently just frightened children, and what do I care what color they were?

Consequently, I opened the door laden with guilt and a loopy smile and asked what I could do for them. They were selling some sort of coupons for their football program. I asked them what high school, and it was not an area school, nor one I recognized. I then asked, “What are you doing all the way up here, then?”.  “Our coach brought us up here,” said the girl. I reply with, “Oh, that’s because he knows there’s money up here.” I did. I said that. Outloud.

Now that my foot was buried up to my shin in my mouth, I started to get even more frazzled. The kids asked me if I wanted to buy a coupon book (fair enough I guess since we’re all so stinking rich up in here) . It’s for things like Long John Silvers and Caesars Pizza and other places I never go to so I said no thanks, plus I told them I have no cash. “That’s ok,” says the young man, “we can take a check”. Who has checks? I don’t anymore. Why can’t they give these kids card readers?

I’m dripping in even more guilt, because I’m sure these teens think I’m lying about not having checks.Then,  I remember that I actually DID have some emergency cash on hand (yes, I dipped into emergency reserves. I was beginning to feel that this was an emergency. What if they think I’m a stranger/black/teen hater?). So  I ask them to hang on a second and go into my cash reserves ~ all I have is a $50 bill.

I give them the $50 bill. Their eyes get really wide and they are gushing with thanks.  I did not take a coupon book, but I told them to study hard and stay in school. Then as if I wasn’t already acting enough like a crazy old bat, I told them to brush their teeth. I did. I said that too. Outloud.

Their eyes got even bigger and I mumbled that I had braces like them once upon a time and they needed to keep them brushed. Needless to say, they couldn’t get off my front stoop fast enough. I need to get this brain/mouth connection sorted out. Fast!

 

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Walk This Way

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I visited my surrogate granddaughter in Arizona a few years back, when she was just learning to walk. She was so cute and so excited to be staggering from one solid point to grasp on to another solid point while everyone cheered her on. I was right there laughing and clapping along until I got up to use the restroom and realized I walked exactly like her. From the couch I grabbed the bookcase, then the wall, then the door frame. If there had been no solid surface, I would have thumped onto my ass just like her.

Lucky for her, she’s now as agile as a monkey. She leaps over chairs, climbs over couches, and skips and hops and somersaults her way through the house and her life.

Me on the other hand… I’m leaving handprints on all the door frames and walls of my house as my walking gets more jerky by the day. I’m leaving a trail of juice box drips on every available surface (except my sippy cup holds wine : – ) .

I’m not gonna lie (I love that expression ~ the converse being “I’m gonna lie”), I’m pretty sick of not being able to walk. The level of frustration is intense on the forefront, yet with a subtle and ever present “hallelujah, I least I can sorta of walk!” backdrop.

That’s a funny thing about MS (and I imagine all progressive conditions). Adapting and dealing with any kind of issues forces you to stare down the barrel of the obvious: it could be (and most likely will be) much worse. So you end up thankful that you can limp, hobble, stagger, mobilize in any goofy, not pretty fashion. Check me out! I didn’t face plant! I only knocked that plant to the floor when I crashed into the table and bruised my thigh. Win!

I end up feeling ungrateful and entitled when bemoaning the good ol’ days of hiking, dancing, standing, walking. Geez, what a spoiled brat! Oooohhh….you want your ability back? Don’t you realize other people have it worse? Reminds me of being told to eat your spinach ~ there’s children starving Africa.

This dilemma is one of those that never crossed my mind when I was more able. Why would it? I believe it is reserved for the chronically challenged (albeit available to all, given pause) and ultimately hard to come to terms with. Be that as it may, I’m mad/happy/pissed/joyous/resolved/terrified that I can move from room to room with my walker. You know, learn to walk before you crawl.

 

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Circle of Life, My Ass…

My sense of bewilderment at losing my mom is beginning to wane, but now I just randomly lose my shit with no apparent provocation.  My siblings are going through the same thing ~ as my brother said to me it just comes out of the blue. Someone asked me the other day how I was doing, and I answered in a whisper that was more like a gentle croak, “my mom died”. Then I started to cry and and cry and cry. I fell down the other day and Anna her boyfriend jumped up to help me and thought I was hurt because I was crying. What I said was, “I’m ok, but I miss my mom”. And continued to cry.

I’m not sure why I’m so surprised by how hard this is hitting me. We are far from a religious family (as my sister said, Mom was a devout atheist), nor are we particularly sentimental. I suppose I had some idea that I’d be all pragmatic…circle of life and all that, when she passed. We didn’t speak every day, nor on a set time every Sunday. But as I said before, she was always present in my life. Day in and day out. For 58 years.

Since I wasn’t able to help dismantle her house due to my MS (which has totally flared up since she died ~ go figure), I volunteered to tackle her photo boxes. I took me weeks to build up the courage to finally open them up, but now I’m on a walk down memory lane like you can’t believe. I’m reconnecting with cousins and also finding family I wasn’t even completely aware of, and although it’s been exhausting, it’s been fun.

My mom was a beauty, that’s for sure. She had such poise and a high watt smile. I am discovering her as a child and a teenager (graduation picture in 1937!), as a wife and a mother, a friend and a musician, sometimes kooky, sometimes bemused.

I have one more box of prints to go through, and then 80 zillion slides. Egad. Missing her is hard, no doubt, but I’m witnessing a life well lived. Good on ya, Mom.

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Mom?

My mom died.

Seeing it inked out in block letters doesn’t make it more real. I thought it might.

I know there are stages to grief, and mine has currently taken the form of bewilderment. I’m 58 years old, Mom was 6 weeks shy of 96 when she died. We were together a long time, so it probably isn’t surprising that I keep getting this jolt of confusion when I remember she isn’t here. Mom? Mom? Where are you? How can I not feel bewildered when I realize she isn’t where she has been for my whole life? She passed away rather quickly. Maybe that’s why I’m so dazed by her absence.

I like to think, and am pretty sure most would agree, that she had a full and satisfying life. She was loved, respected, sharp as a tack, witty as hell and an overall gem of a soul. I believe it would have appalled her to linger on in a hospice and dying by degrees. She was intelligent, somewhat shy, super liberal and hated being a nuisance.

She taught us the importance of music and instilled creativity in us all. She was a giver. My siblings and I continually get notes from her friends ages 20-80 that we didn’t even know that she had, recounting what a positive impact she had on them. She donated. She volunteered. She cooked from the heart. She wrote. She was dignified and ladylike.

Mom gave us the gift of each other, too. She was steadfast as the matriarch and the fabric of our family. In hindsight I maybe wasn’t so aware of it, but she was the connecting point to my wonderful siblings, nephews, in-laws and cousins.

I could ramble for pages and no doubt will as time passes. I inspired my mom to write a blog, so I feel a sense of responsibility to keep this one going. I just wish she could read it.

 

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Meh

The protocol to start my new drug Gilenya is to go to a medical facility (in my case, an urgent care center in the Valley), pop the pill, and sit around for 6 hours while your heart rate and pulse are monitored to make sure you don’t keel over or die or anything.

Simple, no? First off my appointment is at 10 a.m. Being a prompt sort, my good friend Bella gets me there at 9:45. I fill out paperwork, we chat for a 1/2 hour, then she leaves me there. Then it’s 10:45, then it’s 11:00. Um, hello? My appointment is at 10, what’s up? The monitoring doctor isn’t here yet. Ok….

Now, even though I’m unemployed and honestly have nothing but time on my hands, I still feel that my time is as important as anyone else’s. So I’m starting to get a little grumbly under my breath. “I guess this doctor thinks his time is more valuable than mine….sure! just make me wait!….goddam doctors thing they’re so important…” Somehow I’m drifting into a self righteous ‘get off my lawn’ space and feeling more and more like I’m being singled out and wronged by ‘The Man’ and every other human on the planet. Very pretty and helpful in this situation.

Not surprisingly, I take this attitude right with me when I’m finally called into an exam room. A nice nurse takes my vitals, then says another nurse will be right in to give me an EKG. Just put this ridiculous piece of hard stiff fabric that covers nothing of your body on and sit here in the freezing air conditioner for a minute, he says.  10 more minutes go by and I start frothing at the mouth. I am getting pissed! I’ve thrown off the stupid paper shorty gown top, I’m half naked in a sweater and getting madder than a wet hen by the minute.

In comes the doctor and the first words out of my mouth are, “My appointment was at 10. I’m usually a very chill person (obviously) and I’m sorry to be such a bitch but I’m tired of sitting around waiting on you people..blah, blah, blah”. The doctor is unfazed. I’m assuming since this is an urgent care facility she’s used to dealing with people who are a) hungry and b) scared ~ which I finally realize are both true regarding me.

I calm down, get dressed, and pop the pill at 11:20. I’m escorted into a quasi storage room with a big chair in it and then monitored every 1/2 hour for blood pressure and pulse. I finish watching Behind the Candelabra; the movie Birdman (did it really win an Academy Award?); and 8 or so episodes of Seinfeld.

The plan is for Anna to pick me up on her way home from a relaxing weekend in Monterey. The timing was perfect! She got there right at 4:30, but since I’d started late, we had an hour to kill which we did visiting and eating potato chips. At 5:30 I get another EKG and the news from the doctor that she wants to ‘hold me over’ because all my pressures are low.

Drat. I’m kind to the doctor now and being all cooperative and trite because I’ve been such a bitch at the beginning and feeling guilty. She seems to be just going along with her day and harboring no resentment towards me and the time passes and finally at 7:30 I’m released.

On the way out, we stop at the desk to ask her some questions about this super heavy duty, heart beat lowering, ‘we’re not sure how it works’ medication. It goes like this:

Me: “Since I took my first dose today at 11:30, can I take it tomorrow at 10?” Dr. C: “Meh” with a shrug.

Me: “Should I stay home tomorrow and rest, or should I go into the store so Anna can keep an eye on me?” Dr C: “Yes”. Me: “Yes, I should stay home? Or yes I should go to the store?” Dr. C: “Yes”.

Anna: “If she starts to feel dizzy or strange, is that normal? Or should she go to urgent care?” Dr C: “Meh”, again with the shrug. Then she says, “You might feel faint, have chest pains or be dizzy.” Anna and me: “and…?” Dr C : “Meh”.

It was just bizarre. At this point, we can’t wait to leave so we just high tail it out of there and figure we’ll sort everything out as it comes along. Poor Anna, this is how she ends a holiday weekend? I take her out for some dinner, since all we’ve had since 4:30 is a small bag of potato chips, which we split. We go to one of our usual places and when I ask her how her dinner is? She just shrugs and said, “Meh.”

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Seriously. 2 Cookies?

Like the majority of people, middle age has definitely settled a few lbs around the old middle section. In addition to the age thing, I just can’t exercise like I used to (what I wouldn’t give now to be able to participate in my least favorite activity: jogging). A few stark selfies in the mirror was more than enough motivation to decide it was time to drop a few pieces of stored wine and chocolate, and since diet is also huge in managing MS, I put together a plan.

It’s no secret I have the most amazing two daughters and I am endlessly proud of them. Sometimes mistaken for twins, they could not have chosen more divergent careers.

While Elizabeth, as a licensed paramedic, runs around with lights and sirens leading her way (literally and figuratively), Anna chooses to make jewelry and run a business. They are both incredible, and very inspiring to me.

Because on any given day Elizabeth can be found helping skate boarders with broken collar bones, monitoring old ladies with irregular heartbeats, DELIVERING A BABY, or in some cases, just calling it (once it was a guy who met his maker while wearing a cock ring and ‘looking over’ a Farrah Fawcett Playboy spread); she is our go to person when we stub a toe, get a bug bite or give birth to an eye hematoma with a name (Ito). I don’t use the word awesome unless something is truly awe inspiring ~ Liza is awesome.

Anna is equally dazzling. Though she squirms at the sight of the tiniest spider (while her sister can pick up a severed limb), she is no wimp. This girl has gone through a harsh and unexpected divorce and during that time still managed to create, maintain and grow 5 businesses. She creates two of her own lines of jewelry, has a small floral design boutique, owns and runs a gift shop Boulevard 34 (shameless plug here, it’s my blog after all ~ please like it on Facebook! www.facebook.com/blvd34), and has now started coaching a fitness group.

In the spirit of support, wanting to thin down a bit, and the fact that Anna and I are together all the time (and love to eat), I chose to adopt her coaching meal plan. It couldn’t be simpler. It’s all about portion control. Lean protein 3 time per day, veges 4 times per day, fruit, fats, carbs a limited number per day. You get it. And here’s the kicker: since experiencing vertigo starting in early July, I haven’t been drinking wine.

Now those of you who know me (my Tubac friends are no doubt getting up off the floor after being knocked down by this revelation), I love my wine. Over the years I’ve drifted away from beer, martinis, margaritas, and so on, but man I love a glass of wine to wind down at the end of the day.

One would think that by giving up wine alone I’d be shedding weight like a Malamute in summer sheds fur. I’ve (mostly) given up chocolate, wine, popcorn and all crackers and cheese. It’s just all heathy and organic protein and fruits and veges. So I was pretty happy to find out I’d lost 2 pounds in 17 days. Yay! Ok, in actuality I was expecting to “lose up to 10 lbs in 3 weeks!”, but hey, 2 is safe and certain and better than nothing.

But alas. Next door to the store is the most amazing bakery called Berolina’s. It’s run by my friends Youna and Anders (a Belgian and a Swede), and I found that they make peanut butter smash cookies just like my mom used to make from Aunt Iris’ recipe.They are delicious.

In celebration of losing 2 pounds I decided to have 2 cookies (yes, I re-read that sentence and realized how totally ass backwards that is). What’s the big deal? 2 pounds, that’s the big deal. They’re both back. I’m hoping another gallon of water and some lettuce will kick them back out; that it’s just fake weight caused by bloating, heat, an alien force field…something.

I plan on staying with the eating plan. I feel energized, my skin is good, I rarely miss sugar. But I gotta tell ya, once this vertigo thing is behind me, I’m having a glass of wine. To hell with the cookies!

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It Does What, Now..?

Just over a year ago I posted about how excited I was to be trying a new dry cleaning fluid based pill, hoping it’d be a panacea, etc., etc. Well now, 13 months later I can report ~ yeah, not so much.

An $18,995 MRI came back all clean and rosy ~ no new lesions and others even reduced in size ~ this is all good. What’s not good however, is my new inability to do things, like, oh….. WALK. That particular skill has gone directly and solidly downhill.

Consequently, I scheduled a pow-wow with my doctor….wait, I haven’t told you about my new doctor yet, have I? Oh my goodness! Dr B. She is amazing! Very, very, very smart. She looks like Emma Peel as a Russian spy. She’s very stylish and gorgeous and super well dressed. Under her white doctor coat she wears super chic black A-line dresses or slacks and pointy shoes. She has teased hair, black eyeliner, gold jewelry and a PhD. In a nut shell, she is bad ass.

Dr B. and I discussed my options and together (with patient advocate daughter Liza by my side (it was her turn, Anna went last time)), we opted for another newish drug called Gilenya.

This will be drug therapy #3. Two main things seem to be consistent with MS drugs. 1) they are massively expensive and, 2) scientists seem to have now idea how they work. Witness the fancy brochure I had sent overnight to me from Novartis, (the makers of Gilenya). Tucked in amongst the glossy pictures of people laughing and splashing paint all over the place (why? I have no idea), and warnings of side effects you don’t want to know about, is this gem of a phrase on page 10: “While it’s not exactly clear how Gilenya works….”

Whoa, wait a second. WTF? I’m going to take some pill that is unknown as to how it works? The short answer is hell yeah. If it can slow this thing down, then you betcha. Honestly I don’t care how it works, only that it does.

So I get an EKG to see if my heart is ok. I get blood drawn to see if my liver is ok. I see a nuero ophthalmologist (this guy is also gorgeous ~ if you get MS, go to USC Keck Medical Center) to assess if my eyes are ok (I told you you didn’t want to know about the side effects…).  I contact my insurance. I contact my co-pay assistance fund. I get green lighted all the way around and now I am good to go.

The next step is to go to an out patient center someplace in the Valley so that I can take my first pill and then be monitored for six hours to make sure my heart doesn’t stop beating or some damn thing. Chances are one in a zillion, but I guess they want to be sure.

I trust my new Avenger doctor and her recommendations. But let us please, collectively keep our fingers crossed that this works.The next options are even crazier ~ but you can bet I’ll try them if this one doesn’t pan out!emmapeel